Finding Help for Kidney Disease

Diabetes is the leading cause of chronic kidney disease in the United States, accounting for at least 40% of new cases of kidney failure. It is estimated that between 5% and 15% of people with Type 2 diabetes, and between 25% and 40% of people with Type 1 diabetes, will someday develop diabetic nephropathy. This gradual loss of kidney function can lead to kidney failure, requiring dialysis or a kidney transplant. People with diabetes should be screened every year for nephropathy with a microalbuminuria test, which measures protein in the urine. Nephropathy usually has no symptoms at first and is most easily treated in its early stages. Blood glucose and blood pressure control are essential to preventing and slowing its progression.

Although managing kidney disease can be a challenge, especially when combined with diabetes management, there are many sources of help and information that can lead to improved health and quality of life. The following resources may be helpful to people dealing with any stage of kidney disease, and to those looking to prevent kidney complications.

The AAKP is a membership organization that exists to serve all kidney patients and their families. Its Web site features extensive information on kidney disease, dialysis, and transplantation. A section called “AAKP My Health” lets users log in and track their medicine use, doctor visits, lab results, and other information.

The organization also sponsors several live events, including an annual convention, a series of free educational one-hour conference calls called AAKP HealthLine, and a free educational program called Kidney Beginnings: Live, which is held annually in cities around the country for people new to kidney disease and those who would like to learn more.

The AAKP publishes two magazines: aakpRENALIFE, of which a subscription is a membership benefit, and Kidney Beginnings: The Magazine, which is aimed at people new to kidney disease and is offered for free. Visitors to the AAKP Web site can also subscribe for free to, and read past editions of, Kidney Beginnings: The Electronic Newsletter.

The AKF provides grants, financial assistance, and other services to eligible people with kidney disease. Information about AKF programs can be found on the Web site under the “Patients” tab, by calling the organization, or through a social worker at a dialysis center. Forms of assistance range from helping with dialysis-related transportation costs to paying the expenses of a kidney donor.

The AKF Web site also has a helpful set of FAQ’s about treating kidney disease, as well as information on various kidney disorders.

The NKF seeks to help prevent and treat kidney and urinary tract diseases by supporting research, fostering the continuing education of health-care professionals, advocating on behalf of patients, and educating the public. The organization offers free kidney health screenings, helps organize Kidney Walks to raise both money and awareness, and promotes World Kidney Day and the U.S. Transplant Games. The NKF Web site has information on numerous aspects of kidney disease, its treatment, and its prevention.

Membership in the NKF is available for both health-care professionals and those without medical training who have been affected by kidney disease. For nonprofessionals, membership is free and includes a newsletter subscription. Anyone can also subscribe to the NKF’s e-mail newsletter.

The RSN is yet another organization that serves people with kidney disease, but it is run by patients and focuses on nonmedical services. These include Kidney Talk, an Internet streaming-audio show that covers various topics related to kidney disease; an annual National Patient Meeting with featured speakers; a network of “patient activists” who try to influence legislation relevant to kidney disease; and Renal Teen Prom, an annual event for high school students with kidney disease. It also publishes an online newsletter, the Kidney Times, available at www.kidneytimes.com.

The Kidney Trust’s mission is to promote awareness of kidney disease through education and screening programs, with the goal of early diagnosis so that progression to kidney failure can be delayed or prevented for more people. It sponsors an annual KAT (Kidney Awareness Time) Walk, which takes place in cities across the United States. The Web site also has information about kidney disease, including a “Kidney Diagnosis Guide,” with information on risk factors for kidney disease and how to minimize them.

The NKUDIC is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, part of the federal National Institutes of Health; it exists to provide medical information to the public. The Web site serves as a portal to information on nearly every kidney-related topic imaginable. It also has statistics about kidney disease, links to information on clinical trials, overviews of risk factors and preventive measures, and a variety of publications that can be either viewed or ordered online.

This Web site lets users search for dialysis centers in the United States based on location or the name of the center. For those without Internet access, DialysisCenters.org also publishes a printed listing of centers that is available for purchase by calling (702) 448-4417.

DaVita is the largest provider of dialysis services in the United States. It offers a program called KEY (Kidney Education and You) Connections, which is aimed at anyone concerned about, at risk for, or currently living with kidney disease. The free program includes an e-mail and print newsletter, other printed educational materials, online educational courses, and in many locations, in-person classes. You can sign up for the program on the Web site or over the phone.

The DaVita Web site has links to find a kidney doctor or a dialysis center, recipes and other food-related resources, and information on kidney disease, including educational videos. There are also blogs and forums on kidney-related topics.

The mission of the National Kidney Registry is to facilitate living-donor kidney transplants, including matching compatible donors and recipients who do not know one another. The ultimate goal of the organization is to establish a common, worldwide registry through which all kidney donations pass; this could both significantly reduce the waiting period before, and improve the compatibility of, each transplant. The Web site has information on how the registry works, as well as information on becoming a donor after one’s death. Both those in need of a kidney and those considering making a kidney donation can join the registry.

This cookbook, from the National Kidney Foundation, incorporates a wide variety of dishes that have been formulated for people on dialysis. Each recipe lists the amount of calories, carbohydrate, protein, fat, sodium, potassium, and phosphorus in the food, as well as renal exchanges and renal diabetic exchanges. There is also a set of seven-day menus to show how recipes from the book can be used to create a healthy meal plan.

This list of resources was compiled by Quinn Phillips, a former editorial assistant at Diabetes Self-Management.

Disclaimer Statements: Statements and opinions expressed on this Web site are those of the authors and not necessarily those of the publishers or advertisers. The information provided on this Web site should not be construed as medical instruction. Consult appropriate health-care professionals before taking action based on this information.